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Old 02-06-2009, 06:58 PM   #1
Louise O'Brien
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First of all - I have to agree with everyone else. Call it miracle, call it luck - the right person was there at the right time and you survived - and in my world, I'd say that's a miracle.

I just had to respond to this thread because I'm just three months out of reconstruction surgery. An eight hour operation. The one thing I remember is the number of times I was injected with Heparin - a blood thinner I was told that would prevent blood clots. I lost track of the number of times before surgery - and for days after surgery - that a nurse would appear at my bedside for that injection. At least twice a day. I was foggy - it could have been more. I remember it because for some reason it's the only injection I had that was a bit painful.

Then there were the stockings I hated, put on my legs immediately after surgery - also aimed at preventing blood clots. Had to wear those for several days.

So I guess my first question is - did you get Heparin?

And I'm going to be the devil's advocate here because I have had legal training: one of the biggest reasons hospitals will claim they had "no idea" why something went wrong with a patient is because they want to avoid any admission of liability.

Why would they say... oh gee, had we only been more vigilant, given her x number of drugs etc. etc. ??

Much safer to plead ignorance. Hospitals don't want to be sued.

So Steph is right - you need to ask some tough questions.

Having said that - I still think you experienced a true miracle. Your guardian angel was looking after you. It wasn't your time.

Last edited by Louise O'Brien; 02-06-2009 at 07:00 PM.. Reason: spelling error
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Old 02-06-2009, 07:25 PM   #2
Becky
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I really can't add more to the responses you've already received. Welcome Home!!!!
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Kind regards

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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 02-06-2009, 10:32 PM   #3
Jackie07
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Theoretically blood transfusion should not have anything to do with recurrence.

So glad you are O.K. now. Watch for 'post traumatic stress disorder' afterwards and please rest well.
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Old 02-07-2009, 02:27 AM   #4
michka
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Angry

Thank you all for your warm support.
I got a shot of blood thinner the night before the operation. Could Faslodex be incompatible with blood thinners. I do not understand what it says on the Faslodex warning. Something like "if you take blood thinners, tell your doctor". What does that mean?

Yes, I know they didn't watch me right. I was in a recovery room plugged into the monitors. They had several ways of seeing I wasn't well. I have no intention of suing anybody but I want the truth. By law, I can ask a copy of all the internal documents. I will do that because they are afraid to talk. I consider that everybody can make a mistake. These doctors and nurses have a tough job and we love to find them to help us. What gets me upset (and now a little mad) is the tentative to cover up. It's a dangerous attitude for the patients. The best is to put everything that went wrong on the table and correct the process or the training.
I was not really interested in my new breast for days. Now I am happy it is done although it looks terrible; like if they sewed half a watermelon on my chest. I know it is going to improve in the coming days. I am supposed to have another 2 hour operation in 3 to 4 months to do the final shaping. I hope I will be courageous enough to go back!
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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